Response to consultation on the new health research strategy: Chief Scientist Office

Introduction

Alzheimer Scotland is Scotland’s leading dementia voluntary organisation. We work to improve the lives of everyone affected by dementia through our campaigning work nationally and locally and through facilitating the involvement of people with dementia and carers in getting their views and experiences heard. We provide specialist services such as day care, home support and carer support (through training programmes and support groups) in over 60 locations and offer information and support through our 24 hour freephone Dementia Helpline, our website and our wide range of publications.

We welcome the opportunity to comment on the consultation on the new health research strategy for the Chief Scientist Office (CSO). We provide the context for our response under the following two headings in order to illustrate the growing importance of research into causes and treatments for dementia. We then respond to the consultation questions of specific relevance to ensuring people with dementia are not disadvantaged by the new arrangements.

Dementia

Dementia is a clinical syndrome describing a group of conditions which cause ‘brain failure’. The main causes are Alzheimer’s disease and vascular dementia. Unlike many other terminal conditions with short periods of evident decline, dementia is characterised by a long trajectory and prolonged decline . Dementia is a major cause of disability. It contributes 11.2% of all years lived with a disability, more than stroke (9%), musculoskeletal disorders (8.9%), cardiovascular disease (5%) and all forms of cancer (2.4%) . Whilst it is difficult to estimate the contribution of dementia to mortality, given people with dementia will often have co-morbid health conditions, an estimated 25% of all deaths are attributable to dementia.

There are currently 60,000 to 67,000 people with dementia in Scotland in 2009 , approximately 1,500 of whom are under the age of 65. Dementia is a key health issue facing the nation over the coming decades as our population ages; the number of people with dementia in Scotland is expected to rise by 70% from 2009 levels to between 102,000 and 114,000 by 2031 . The Scottish Government identified dementia as a national priority from 2008 .

Dementia has a major impact on our economy; the cost of dementia in Scotland was between £1.5 and £1.7 billion in 2007, this is projected to increase to £2.6 and £2.9 billion by 2031 with the increase in incidence . Delaying the onset of dementia would have a significant impact in reducing this cost.

Dementia research

There is a need for research into better preventative treatments, better symptomatic treatments, causes and ways of preventing or delaying dementia. However, public funding for dementia research in the UK compares poorly with that of the USA . In addition to this public spending on dementia research is significantly lower than that of cancer; in 2006-07 the UK Government spent 2% of its medical research budget on dementia, and 20% on cancer . The Dementia Research Network budget over the next three years represents 0.5% of the CSO budget.

A recent British Medical Journal article highlighted the implications of future devastating costs to the NHS if there is not a sustained increase in public funding to support research of drugs in development which may slow the progression of Alzheimer’s disease within the next five or ten years .

Response to consultation questions

Q2.1 Do you support these moves towards developing Scotland-wide collaborative structures?

NHS/academic collaborations are welcome in principle but are likely to be detrimental to research areas where Scotland does not have a strong academic base. Whilst cancer research is likely to benefit from the Scottish Academic Health Sciences Collaboration, dementia research is likely to be sidelined because there is a minimal Scottish old age psychiatry academic base in the four major universities.

We recommend that CSO enter into discussion with leading universities to ensure the Scottish Academic Health Sciences Collaboration will be productive for dementia research, given dementia is a major health priority.

Q5.1 Beyond the three recommendations of the Data Linkage Workstream Group, what other steps are needed to ensure a streamlined, safe and robust system of providing access to linked health records for research?

People with dementia are frequently disadvantaged as they may no longer have the capacity to consent to having data held on registers being used in research. It would be impractical to approach people with dementia whose data are held on primary care dementia registers for individual consent, due to the resources required to determine capacity and also to search for suitable proxies.

A remedy for this would be for the Scottish Government to enable data to be made uniformly available to researchers, ensuring individual patient anonymity.

April 2009